Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives. Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Regardless of the state of Tommy’s mind and body, it is we who are broken. It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression. It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip. We are the ones who both stare and look away. Homelessness doesn’t respond to swelling music and huge parades. PTSD isn’t best treated by ignoring it.

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations. Why is that?

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

In the USA, Black women have the highest mortality from breast cancer of any other group, despite the rate of diagnosis of breast cancer being highest in White women. Hispanic women have a lower breast cancer diagnosis incidence than either, but mortality rates are disproportionately high in Hispanic women also. Here are the CDC incidence and mortality statistics over time:

“Incidence rate” means how many women out of a given number get the disease each year. The graph below shows how many women out of 100,000 got breast cancer each year during the years 1975–2005. The year 2005 is the most recent year for which numbers have been reported. The breast cancer incidence rate is grouped by race and ethnicity.

For example, you can see that white women had the highest incidence rate for breast cancer. Black women had the second highest incidence of getting breast cancer, followed by American Indian/Alaska Native, Asian/Pacific Islander, and Hispanic women.

The graph below shows that in 2005, black women were more likely to die of breast cancer than any other group. White women had the second highest rate of deaths from breast cancer, followed by women who are American Indian/Alaska Native, Hispanic, and Asian/Pacific Islander.

The researchers analysed national cancer records for 18,050 US women, aged 65 or older and otherwise non-disabled, who were diagnosed with early stage breast cancer during an eleven year period to 2002, and who received breast conserving surgery and radiotherapy, but not chemotherapy.

30% of the women in this study had to wait more than six weeks after their surgery before they could have radiotherapy. Delays greater than six weeks were associated with a modest but significant increase in local recurrence of the breast cancer.

The study also showed that there was a continuous relationship between radiotherapy delays and local recurrence; the sooner radiotherapy was started, the lower the risk of cancer recurrence, and this relationship was strong. This is concordant with previous studies.

So who was subject to these long, risky delays in treatment?

Sadly, the answer will not surprise you: Black women, Hispanic women, and poor women. Black women were almost 50% more likely to experience a longer than six week gap before radiotherapy treatment, and Hispanic women experienced a 30% increase in risk of delay.

The followup was only five years long in this study, and breast cancer tends to be a cancer that bides its time; the increase in risk (and in consequence mortality) may be greater, even much greater, with longer followup. In addition, as local recurrence risk tends to more common in younger women and this study focused on older women, the effect could be more pronounced in the total population of those with breast cancer. In addition, the study studied mostly White women, as Black women tend to get their cancers younger and have a decreased likelihood of receiving breast-conserving surgery and radiotherapy. In other words, this study was set up in a way that made it, in some ways, particularly difficult to find a significant difference in the effect they were looking at; the fact that they still found one means that the effect is likely to be really quite pronounced.

One good example of how practices can be improved is the Rapid Response Radiotherapy programme in Ontario. This programme has drastically shortened waiting times for patients having palliative radiotherapy by restructuring the referral process so that many patients are treated on the same day as their consultation.9 Countries where disconnected systems are responsible for different aspects of treatment will find it more difficult to ensure that diagnosis, referral, and treatment are not subject to delay.

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”